Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

change the world (through a blog...how naive, how vague, how self-aggrandized!)

I have been silent, communicating mainly with my nurses and doctors by day, laid up on my couch by evening into night into morning, watching formulaic TV shows (that I used to scoff) because my brain refuses to comprehend anything of complexity or international importance.

I have been feeling sorry for myself, and it's really pissing me off, but I can't stop. It's like sugar - one indulgent three-layer chocolate cake after-dinner dessert becomes a gateway drug to night-time chocolate bars and afternoon oatmeal cookies. At least there's some fiber there. (If you have TM or on the drugs I take, you'll understand the reference. If you're not, I'll just spell it out: constipation.)

How crazy is it to yearn for pain?! (NOTE: No offense or correlation meant to S&M aficionados)

As my feeling body hides more of itself from me, I still feel the fire of neuropathy, the ache of a hand caressing my shoulder, the ghosts of The Drake pounding my spine. And I become complacent, lazy, angry.

Within the arrhythmic dullness and blur - dimming pigments, vision's deception, body's rebellion - I still have the Mel-spirit: story lines, entrepreneurial adventures, artistic visions, social & political concerns, compassion, conviction, and passion.

In my Transverse Myelitis (TM), autoimmune-inspired state, fatigue and confusion are winning. And I am becoming a little-skinny-water-logged-loser, limping behind myself - slower and more imbalanced than the real cane-sporting, glamour-seeking, stumbling and recovering me.

SLOW & UNSTEADYIt's difficult to accept a refined definition of "mover and shaker" - myoclonus in body and voice, tremors in hands and fingers, spastic bladder, IVIgdelerium reactions, 110 lbs of a body teleported to Jupiter, ideas that prefer to play "hide and don't seek" rather than mindful actualization, an activist in hiding, a recycler dumped like generic waste into a generic garbage can.

Perhaps today's rain has melted the sweetness of my appetite to think and do and act - to smile at adversity and eat it for dinner.

Maybe the culprit is:

the increased frequency of my home-bound IVIg infusions from 5 days monthly to 5 days biweekly

the conflicting fear/hope/relief of starting azathioprine on Monday, a new and potentially nasty immuno-suppresive regimen to treat my recently confirmed autoimmune disease

last week's bloody urine - a UTI that blossomed in silence because of my body's blindness to the burn

vision with a moody mind of its own

Receiving IVIg at Home. Photo Credit: Mom

Or maybe, I'm just a girl with 7 months of TM under her skin.

REBEL WITHOUT A CHOICEI am a mutt: part rebel, part bourgeoisie. I want to control my rebellion - physical and mental. But no. I have to give the reigns to a body without a cause, pills, infusions, and doctors. I must concede. I could build an army, and I have, but the truth is, when you are sick, you are always alone.

Dear Optimism, Hope, Belief, Faith, and Perseverance,

Where are you, my dear friends, today? I miss your energy, your ovation-deserving performance. Obama is talking you up on CNN. Are you tired like me? Have I impoverished you, weakened you with tendinitis from over-use?Inflamed tendons are painful and slow-healing, but they recover with rest.

Forgive me. I'm feeling selfish - restless by the requisite, the force, the enforced tariff-will of rest-reduce-relax-retreat-repeat, an identity under constant revision; please work through your strain. I need you. My cats need you. My mother needs you. Everyone I know needs you. I promise to be more considerate of your needs and appreciative of your philanthropy. Admitting that I need is terribly humbling. But you know that as much, if not more, than my apartment's carpet.We all need sleep (and a good vacuuming). We have broken pieces that find their whole with closed eyes.

*Neuropathic pain is a common and increasingly prevalent form of pain that is thought to involve an alteration in nervous system function or a reorganization of nervous system structure. It can be associated with nerve damage caused by trauma, diseases such as diabetes, shingles, irritable bowel syndrome, late-stage cancer or the toxic effects of chemotherapy. In many patients, damage to sensory nerves is accompanied by varying degrees of pain. The experience can range from mildly increased sensitivity to touch or temperature to excruciating pain. This kind of pain is extremely difficult to manage clinically because it fails to respond to most medications currently used to treat other forms of pain. According to Pharmaprojects, a healthcare publication, each year approximately 26 million people worldwide suffer from some form of neuropathic pain. (http://www.acadia-pharm.com/programs/neuropathic-pain.htm)

1 comment:

The Daily Show with John Stewart and The Colbert Report- satire as its supposed to beImportant Things with Demetri Martin- some people like him, some don't. easy laughs though.Dollhouse- scifi, government conspiracy; a little formulaic but less than most shows

This website may help too- http://twittv.blogspot.com/2009_03_01_archive.html

If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.